Jacobs Mommom's Comments

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At 12:06pm on April 28, 2009, Jacobs Mommom said…
Hi Terri:

For some reason I was thinking it was close to us! We live about 50 miles west of Philadelphia.
But you can still help with the golf ball drop event by selling tickets:)

I am Jacob's MomMom and soul mate:) We need to know what the other one is doing at all times.

I was going to go to the conference this year but I have a show to do that weekend and it's just too much to fly down Wednesday, come home Friday afternoon and then set up at a show Saturday morning so I decided to wait one more year. We couldn't attend when it was nice and close in Philadelphia the last two years because we had made reservations for a camping week for both years 4 years in advance!

If it ever comes back to Phila. we will then make it.

I'm glad to hear that Bille is doing well. Jacob will be 9 in July and his strength is great but he was put on an ace inhibitor because his heart was beating too fast and working to hard. They said they are doing this as preventative medicine now. We take Jacob to Cinn. Children's to see Dr. Wong.

I'm sure you are right and we will meet sometime. It's a shame you don't live closer because Jacob would like to meet someone his age with Duchenne and all the boys around us are alot younger.
At 8:30pm on April 27, 2009, terri ellsworth said…
Hi Jacob's Mommom,
Coraopolis is about 10 miles west of Pittsburgh going towards Int.l Airport. Billy is also eight and doing well. I'm not sure where Doylestown is either, but I just have a feeling that we will meet sometime. I will eventually post pictures.
I gather from reading that you are Jacob's grandma? We will all get through this somehow and everyone, keep positive and keep the faith and ask God for strength and courage. I, too, am an older mom, will be 51 July 4. I remain positive, but realistic, but without hope and faith, I wouldn't be of any use to Billy. In the meantime, while the doctors and scientists are working hard to help and cure our sons, we need to enjoy the boys and the strengths that they do have. Billy keeps me in stitches. Will go for now. Take care
At 2:54pm on April 20, 2009, Jacobs Mommom said…
Jacobs is only once a day also and is the minimum dosage. I wonder why they are using two different ace inhibitors?
At 1:58pm on April 20, 2009, jenn said…
max and austin were put on lisinopril, also an ace inhibitor. i hadnt heard of that one before, it is a mild once a day dose.
At 7:09pm on April 19, 2009, Jacobs Mommom said…
Hi Char:
Jacob will be 9 in July and is doing very well as far as strength goes. The was in Cinn. last week and they have started him on Carvedilol which pretty much put me in a panic when I started to read about it but then I talked to Pat and she had Cathy from Cinn. call me and explain it to me. Jacob's left ventricol is enlarged but since his last 6 mos visit he has grown into it some. His heart is also beating fast which is another signe of a DMD heart so they are now putting the boys on Carvedilol to help slow it down to keep it from working so hard as a preventative measure so once I heard that I calmed down some. He's on the lowest dose once a day and they said it would be like putting a drop of water in the ocean so I felt better. Jacob has been on deflazacort for 1 1/2 years now. Besides the puffy cheeks and the hair growth nothing much else has changed. He's still my sweet, smart and loving grandson:)

He will go back in 6 mos to have it checked and possible to be put on growth hormones which will help more with strength as well.

My daughter is 37. When you say you are older can I ask how old? How is your son doing? I see your posts and read them. You have a lot to offer the other parents.

Donna
At 12:13pm on April 19, 2009, Char Burke said…
Hi Jacob's mommom - I am a DMD mom out of Seattle, WA How is he doing? Our son is 6 years and 8 months - and I am an older mom. Are you noticing any changes in his gross motor at this time? Is he on steroids? Char
At 3:41pm on April 9, 2009, Gisel Rivero said…
Thank you so very much, you have a beautiful family as well.

Thank you
Gisel
At 6:26pm on April 2, 2009, Jacobs Mommom said…
Thanks for the info. I will forward this on to my son-in-law as well.

Jacob is funny about staying with anyone. I'm the only one he will stay with besides home. He loves to go camping with me in our camper but I'm not so sure about the other. Also, he doesn't know about a wheelchair yet and he is the type that can't handle that yet and is still trying to understand that his leg muscles are different from others so I'm afraid that boys in wheelchairs might be too much. I think when the time comes that he will need one it might be a good idea then but who knows. These are such tough decisions to make.
At 5:40pm on April 2, 2009, jenn said…
our pool was custom, so it doesn't have a specific brand name, i just noticed your camp comment, i thought no way would max ( then 6 ) stay at camp, but after 5 minutes there, he was ready for me to leave him, and didn't want to come home when i get there (and we are pretty cool parents)
At 6:41pm on April 1, 2009, jenn said…
hi there, yes we put in a pool room in our home, the pool is 10' by 16' and 5 ' deep. it is made of aluminum walls with a custom pool liner. we keep the pool around 85 degrees and the room has to be slightly hotter. we love our pool, it is great for the boys. the only thing we wish we had done is put in a drain in the floor, we splash alot!
At 2:00pm on March 30, 2009, Jacobs Mommom said…
We have an attorney in the office complex where I work and sometimes I do some transcribing for him. He always asks how business is going and says that people are always getting themselves in trouble as far as his business.

I try to tell Heather to not worry about things we can't control and that we will figure out what needs to be done if she loses her job but it's easier said than done to tell her not to worry.

What kind of scooter did you get? Jacob's comes apart. The battery comes out with a handle on it and then the scooter folds down. I drive a subaru outback and I can put it in the car myself. This thing would fit in the trunk of any car. I can get the name from Heather. If I can handle it anyone can:)

It makes me heartsick to hear that your mom doesn't understand. Is she much older? I can't imagine not being involved in Jacob's care and helping out and being with him as much as I can!

I'm spending every extra minute that I have with him and doing everything that I can for them. I don't want to regret not doing so.

Keep Swimming! Isn't that what Nemo says:)

Jacob hit me with "Why would God give us this disease? Are we going to end up in hell with satan because we did something wrong?" This kid doesn't go to church! He was in a Methodist day care but that was 3 years ago. The questions just keep getting tougher.

I don't know about swimming but I can tread water:)
At 12:47pm on March 30, 2009, cheryl cliff said…
Just keep swimming as Christian used to say. Sorry to hear you guys are having more "bumps" on the road. I can't imagine the IRS in this economy causing your son too many problems. Probably as long as they know where to find him and that he isn't hiding anything they won 't care too much. I imagine he has the option of making payments and/or getting a reduction. Sometimes its as simple as just asking them.

We've had our share of economic troubles too. No one is exempt, law firms all over the US are feeling it. My family is NO help with this DMD stuff...the other day my mother saw me crying and actually asked me if it had something to do my going thru "the change". I had to explain, no mom, my son is dying, that's reason enough to cry. And, we are trying to get a better scooter for Alexander, actually found one that will do and guess what...we now have to sell our car(s) in order to get something that will transport the thing. Can't imagine selling anything these days but I guess we should start with just one vehicle this year.

I don't know when life will get easier, probably never. Take care of your back, Jacob needs you strong and well rested!! Sounds like you need a vacation from everything, me too!
At 8:21pm on March 28, 2009, cheryl cliff said…
Just wanted to say hi and see how you are holding up. We missed the Advocacy conf...Paul's office required his attention so we cancelled at the last minute. Did it go well?

Have the job changes in your family get resolved? I hope so, we have enough stress in our lives, don't we!

cheryl
At 9:17am on March 25, 2009, Jacobs Mommom said…
Thanks Jenn:

I don't think that Jacob will stay at camp by himself but if we as a family could take him there that would be great.

I will give the information to my daughter.
At 9:15am on March 25, 2009, jenn said…
for more info about the ranch look online "double h ranch, lake luzerne ny" our contact is Tara, or Caroline the phone number is 518-696-5676 x 263. my boys will be there for camp july 27-aug 1, session 5 . if they still have openings, thats the only week open. call soon! good luck, jenn
At 12:08pm on March 23, 2009, Tamara "Michael's Mulisha" said…
Hello, My son Michael is 4 and we will be at Dr. Wongs from April 6th - 10th. His appts are the 7th and 9th. If you want to meet, let me know. Send me a message or call me 623-670-3575 -Tamara
At 2:29pm on March 16, 2009, Evelyn said…
Hi there again
I have been lurking around on here and I read something about your trip tp OC. I do not know anyone that needs a trip, but we go camping down that way too. WE have not been to Frontier town in a while, but would be willing if another BMD/DMD family would meet up there. My son is 3 and we would love to meet up with some BMD/DMD families. You see active on this board and thought you might know a way to connect. Please let me know of any advice
Thanks
Evelyn
At 11:28am on February 28, 2009, Jacobs Mommom said…
I know of one case on the Utah Registry that is BMD with exons 42 and 43 missing and so I asked Dr. Finkel about it but he said that Jacob is not producing any dystrophin so he is DMD. The only thing he agrees with me is that having those exons missing means that the heart is more affected. I hope that everyone is wrong but it just really scares me to death.

Thanks for helping me.
At 9:05am on February 28, 2009, Ofelia Marin said…
Donna,

You shouldn't be upset. There are several documented cases of BMD diagnosed in their 60's with those exons missing. So I am not sure that what Mirek suggested will happen. Keep in mind that nNOS is only ONE of the processes that need restored using exon skipping or gene therapy. Also, we don't know if exon skipping will work as well as gene therapy...actually we don't know if it is going to work at all... From that paper we could only conclude that a minigene containing those exons works better in terms of restoring the nNOS than one that doesn't contain exon 41-46...but they did not look at all the other stuff that needs to be restored, only nNOS, and only using gene therapy!

Ofelia
At 9:09pm on February 27, 2009, Perlita & Gordy Hains said…
I told my husband about Dr. Wong - we will definitely look into Cinncinati. I have heard about supplements but again... I'm very overwhelmed! Thanks for offering your # - I really appreciate that. I'll try & give you a call soon, usually later in the evening when our boys are in bed. enjoy your wkend:) perlita

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